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RADIOTHERAPY -TIP.
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11/17/2008 17:40
Mary 
11/17/2008 17:40
Mary 
Re: RADIOTHERAPY -TIP.

Hi Trevb

Good to hear you got there OK and had some good news on the treatment if you decide to take it up. I have to ring my GP tomorrow, he asked for a few days to check out if he can refer me, I gave him all the contact details so hopefully when I speak to him tomorrow he will agree to referral.

My hand is quite painful on the back of the hand exactly where the lumps are on the palm so I don't know whether the nerves are affected but I get painful spasms a bit like cramp on some movement (especially typing) so I am eager to ask Dr Goode if the radiotherapy would cure this.

I know what you mean about the travelling, I live in Worcs and it would take me over 4 hours to drive so would have to stay over. What was the hotel like?

Best wishes, keep us informed how you get on in the new year

Mary

11/17/2008 20:34
TrevB 
11/17/2008 20:34
TrevB 

Re: RADIOTHERAPY -TIP.

Hi Mary

I did get there in the end. It was 5 horrendous hours (left at 1 & arrived at 6), too much in the dark and rain and now I’ve a wait to see which safety cameras got me.

I’m fortunate in that my hand isn’t at all painful but the knuckle on my unaffected hand is which is strange. My fear would be the stuff wrapping around nerves or similar so I hope you’ve no problems there. I don’t think Dr Goode will offer cure (that’s my impression anyway) but he will give you the stats on how radiotherapy can slow significantly, or even halt if you’re really lucky, progression and further damage to your hand/s

Read through this site and print off the radiotherapy presentations for when you see anyone medical. You'll know what you're talking about and I think they respect that and the fact that you have some knowledge of the disease and treatments.

There is no reason that I can see why your GP can’t refer you so don’t take no for an answer. Phone or e-mail Dr Goode’s secretary if you really hit a brick wall with your GP.

I’m at the Arndale Hotel on Wimborne Road. It’s expensive for what it is but I used it a couple of years ago so went with what I know for a couple of days. I might have to find something cheaper for an 8 day stay. Wimborne Road (Poole Stadium end) is a stones throw from the hospital so accommodation on or near is what you’ll need if you get the opportunity.

One thing that I forgot to ask is that I'll need to drive home for 5 hours after treatment in the new year and will my hand be ok to do that? That's going to be a major problem if not.

Cambidgeshire, UK.


Edited 11/19/08 18:05

11/20/2008 15:38
Mary 
11/20/2008 15:38
Mary 
Re: RADIOTHERAPY -TIP.

Well I think I am a little nearer to being referred to Poole, finally got through to my doctor last night. He told me he had spoken to Dr Goode's secretary and could see no problem with the referral but wanted to speak to the head of orthopeadic surgery here in Worcs first. He couldn't see a problem and will let me know if there is, otherwise I should have an appointment sent through from Poole. I was hoping for a more positive response but I'll just have to wait and see for now.

12/20/2008 13:25
Mary 
12/20/2008 13:25
Mary 
Re: RADIOTHERAPY -TIP.

This morning I received an appointment to see Dr Goode in Poole on 12th January. Trev, I wondered if you had decided to go ahead with the treatment?

12/20/2008 15:58
TrevB 
12/20/2008 15:58
TrevB 

Re: RADIOTHERAPY -TIP.

Quote:



This morning I received an appointment to see Dr Goode in Poole on 12th January. Trev, I wondered if you had decided to go ahead with the treatment?





Hi Mary

I've decided to go with radiotherapy. There's not a nice option with this disease unless you get lucky (I don't want to take the wait and see option any longer option (I'm 3 years down the line)) and I think that this is the best of our limited options at this time.

That date is the start of my 1st week of treatment. I'm staying in Poole again from 8-16 Jan, all for 1hr set up & 15 mins of treatment (rather disappointing when Addenbrokes is only 50 mins away from me). Our paths might cross, good luck

Just to add Mary, it might be worth a phone call to Poole Tourism 01202 253253 for a Poole Guide 2009 - interesting stuff!

Cambidgeshire, UK.

Edited 12/22/08 17:31

12/24/2008 10:09
Mary 
12/24/2008 10:09
Mary 
Re: RADIOTHERAPY -TIP.

I have booked at travelodge at Ringwood, on the way home for the 12th January. Luckily my daughter has booked a villa at Center Parcs at Longleat, Wiltshire for the weekend before so I am going to travel down and stop with her for the Sunday night, this is great because I find Center Parcs so relaxing and being half way to Poole will mean my journey down there on the Monday should only take an hour or so from there. My appointment is for 2.30pm on 12th. Maybe see you there at some point. Good luck

06/18/2011 20:34
Karl

not registered

06/18/2011 20:34
Karl

not registered

Re: RADIOTHERAPY -TIP.

meganlyden:
Hi!

Hmm, now I'm a little worried (but then I'm a worry-wort by nature). I have just completed full palm radiation; and the doctor I am seeing said it would not rule out NA or even additional radiation in the future if necessary (I'm hoping it's not). The radiation is such a low dose the risk of side effects is apparently minimal. I thought I just had Dupuytren's in the right hand but prior to starting my therapy, we discovered very fine cords extending from my left thumb into the palm. Now I'm a little worried, but I don't want to freak myself out about just having had my palms radiated.

Megan L (Bellevue, Wa)




Megan,
I am looking for RT in the state of WA. Was Boise the closest you could find???

KLKTEX@aol.com

thanks,
Karl

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